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Elderly parents

Lewy body dementia- anyone with any experience of it?

4 replies

Boxingshibes · 25/04/2025 19:38

My DM has recently been diagnosed with Lewy body dementia.
She has been forgetting things. So I was worried. But DF came over last week after a frantic phone call from her at 6am on Sunday claiming there was a strange manic bed with her.
He explained that she's been confused, not sleeping, hallucinating and violent.
They have subsequently been to A&E and have had both the mental health team and a physiatrist visit.
Anyone got any advice?

OP posts:
tobyj · 25/04/2025 23:36

My FIL was diagnosed with LBD about four years ago (he died threee years post diagnosis). It's a form of dementia that's closely linked with Parkinsons, so it can cause some physical as well as cognitive symptoms such as stooped posture, shuffling gait and a tendency to 'freeze'. It's often characterised less by memory loss in the early stages than by other cognitive issues, such as difficulty with executive tasks. It can be very up and down - FIL would have times in the day when he'd completely zone out, and other times when he'd be pretty 'normal'. It often comes with sleep issues (REM sleep disturbance, which is basically where people physically 'act out' dreams), sometimes years before diagnosis, and can cause loss of sense of taste and smell (FIL had both of these for years prior to diagnosis).

Another hallmark is hallucination even in the early stages - things like seeing children and animals. FIL appeared to have this less than some - but he did have times when he became confused and suspicious over who people were (thinking his children were employees, or thinking his wife was an impostor). Luckily, he was very rarely violent, but he did occasionally lash out or physically resist attempts to calm him in response to his more confused episodes (eg when he thought a family member was someone else).

I'm really, really sorry OP - it's a very difficult diagnosis. Medication did help FIL to an extent - it seemed to reduce the 'impostor' syndrome and lessen some of his distress. He lived at home for nearly three years after diagnosis, but it got harder and harder - towards the end of that time he was deeply confused a lot of the time, and spent quite a lot of the day either asleep in a chair or zoned out, or more awake but fretful, and his nights were quite disturbed. Eventually, after increasing amounts of respite care, because MIL just couldn't cope, he went into a care home permanently, but he died a couple of months later (of a stroke - no idea if related to the dementia). To be brutally honest, I think it was a blessing that he didn't have to go on for longer, as he had very little quality of life by that stage and was frequently either utterly confused or sometimes distressed.

I'm sorry that this is a negative post, but I don't want to sugar coat. What I would say above all us that it's very, very tough on a spouse to care for someone with LBD. It sounds like your DF might have been masking how bad things have been? Of course you'll want to do the best for your DM, but actually it might be your DF who is at least as much in need of support. Looking back, I don't think we really, properly appreciated how hard it was until quite late on.

My heart goes out to you - and please feel free to ask any questions. I'm no expert, but I did see this illness up pretty close and read an awful lot about it online at the time. In terms of advice, I don't have much - except to ask the medical team about drugs (if she's not already on them) and to start looking at what care might be available to help support your DF. Is your DM admitted to hospital at the moment?

Boxingshibes · 27/04/2025 12:39

Thanks. She's at home at the moment. She varies between being ok and being argumentative. My df doesn't want me visiting atm. She's fallen out with the rest of the family recently.
She won't have any more tests or take medication as apparently everyone is trying to poison her.
We don't really know what to do. She keeps checking df phone so I can't really talk to him.
We just don't know how to help!

OP posts:
MattSaracenQB1 · 27/04/2025 12:58

You may find some help for you from this organisation https://www.raredementiasupport.org/

MotherOfCatBoy · 29/04/2025 16:37

I’m not sure if it was Lewy Body, as she never really had a formal diagnosis that I’m aware of, but my DAunt had dementia like this. She had a bad fall in 2017 which broke her shoulder, then a long spell in hospital, and when she was discharged it was apparent she was hallucinating regularly. (No children, never married, lived alone in the same street as my DPs).

She would see children playing outside her window when there were none there; she said a little Chinese lady came out of her clock and talked to her.. Her sleep became erratic and she could no longer keep track of time of day. She had another couple of falls, ended up almost permanently in hospital. There she became bed bound and slept a lot of the time. She had bronchitis in the winter of 2018 but sadly was treated comprehensively and recovered enough to be discharged to a care home, where she died 4 months later of a burst stomach ulcer.

It was a very distressing experience to watch her decline. There were some amusing moments when she was convinced that rather than being in hospital she was an extra in a TV medical drama.. but as time went on she became frightened and used to call out for help a lot. The only thing I could do was visit and spend time with her. She recognised everyone to the end and she didn’t seem to have any problem with speech. However eating became almost alien and it was as if she didn’t know what to do with food anymore.

Im sorry, this is a hard road. You might want to talk to your DF about options for treatment towards the end. I wish my D Aunt had died of her bronchitis and missed those last four months.

I hope I don’t sound harsh. It’s heartbreaking. I don’t know what else to say. ❤️

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